Answers from Cleveland

Well, several weeks ago I wrote the post about what we learned in Cleveland, but it never went through.  So, the short version is that she never had a seizure while in Cleveland.  The final opinion was that if her seizures come back and don't respond to medicine, she is a surgery candidate.  However, her spiking is in a large portion of her right hemisphere, so the surgery would not be as small as I'd like.

But for now, they agree with our doctor in Jackson that medication management is an on-going process and that you have to weigh the side affects with the benefits and just keep trying.

When we first left Cleveland, we had several really tough days (behavior/cognitive/attention).  After  a few days I realized it was because she had abruptly begun her seizure medication back and had to adjust to it again.  That tells me her medicine is helping her functioning, but that starting it back abruptly makes everything worse.

The best part of Cleveland Clinic was hearing the best pediatric epileptologists agree with our Dr. Parker.  Also, every person I met told me how wonderful Dr. Brad Ingram is.  Dr. Parker had told us all about him before we got there.  He studied at UMC and just completed his fellowship in pediatric epileptology at Cleveland Clinic.  He studied under Dr. Parker at UMC. There are less than 60 pediatric epileptologists in the US, and we are so lucky to be getting a great one. It will be the first time UMC has had a pediatric Epileptologist.

Dr. Ingram visited us at Cleveland Clinic and chatted for over an hour.  He is the most personable and kind man I have met!   He said the reason he is returning to Jackson to work is because of Dr. Parker!  He will be the one we see in Jackson whenever we are in for video EEGs.  He and Dr. Parker will be working closely together.  He already knew we were because he and Dr. Parker had consulted about Madalyn in the past.

In addition to chatting about random things, he shared that he has epilepsy.  He also shared some stories about Doctors that didn't help him in the past with his epilepsy.  He also said he got the 'lamictal rash" just like Madalyn did, and being an adult, postponed getting off the drug (very dangerous, and he admitted not a smart decision at all) just because it gave him the best seizure control with zero side affects.  SO, when I complain about missing the days Madalyn could take Lamictal, he totally gets it!  So, great :)

So, a great trip, all in all!  I don't think we will need to return, unless seizures get out of control and require surgery.   I honestly don't think that will happen, but Cleveland Clinic is  there if we need it.